going private diagnosis for autism/aspergers

Hi there.

I was wondering whether anyone can give me any advice. my son is 4 and will be 5 in novemver. In sept 08 he was diagnoised with adhd. The 1st specialist we saw had said we was looking at autisim but when he was assesed they said it was adhd. It was stated that he had autistic traits but not enough for a diagnosis and the fact tht he is loving and makes good eye contact.

He has recently started recpetion class at school and has just had his 1st parents evening. The teacher and senco worker thinks he has too many autistic traits and are planning to re-refer him to be assesed for autisim.

As parents we have always thought that there was more to him than adhd and have always said this.

We have been thinking about maybe taking the private route. We was not happy the fact he was assesed before in a room for an hour when the most of his problems are at home or socially. We would like the person to assess him to meet him and spend time with him etc.. I am happy to pay for this as i feel if we go down the nhs route we are going to get the same assessment and i feel he will then be on his best behaviour again and his traits wont stand out. IFYKWIM.

I was just wondering whether anyone has gone down this route. Is there anyone some one can reccomend? and also if we go privately is it a recoiginized diagnosis?

We just feel that we waited ages for the last assesment and really dont want to go through it all over again and for it to be a waste of time.

Hi stacey,my son passed the ADOS test and then was referred to be watched at an assessment unit daily for a few hours a day and he was dx with autism.
I didnt feel our first assess. which lasted 45-60min would show what we see in our son.
So you can get what you are looking for on the NHS,our son still attends this unit and has been there for about 12 weeks and they have been great especially after 5 years of not being listened to.Good luck,if youve any questions please ask.

Hi claire thanks for replying.
the unit sounds a good idea. Do they automaticaly get referred to this unit or did you have to request it?
when our son was refered to the child development unit 1st of all in jan 08 from the gp he was seen by 2 specialists for inital appointments. The last specialist we saw said we was looking at a diagnosis of autisim, and gave us books on it. she then put him in for an assesment which consists over 2 days for an hour each time. an hour to see the occuptoinal therapist and the other hour was to see the speech and language therapsit with the physchologist. And on a 3rd day there was a big meeting to discuss his diagnosis which was adhd.
i do feel that he has adhd but also feel he also has autisim ( asperger) as he has too many traits. They did say that he had autistic traits and that they may come out stronger as he got older. He was still seen within the child development unit but i think he is due to be discharged soon as he is coming up to his 5th birthday. (im not too sure how it all works)

I have always felt there is much more to him than the adhd and i also feel that they will not see what my son is about in an hour. He needs to be watched over a period of time etc...

Hi stacey,i think it may be a child developement centre my sons is at,we had a meeting for an hour where they said he showed autistic traits then i was seen alone for an hour and asked about my son and family history,then my son had an ADOS test,we didnt get the results until a month later which we were told he was ASD but they could see something and he was refered to CDC under a child psychiatrist where he was watched it was set up a bit like a small school with teachers,TA,doctor and nurses and after watching him they said he was definately autistic but it was difficult to pick up initially because he could speak so well.
We didnt ask for him to go to this unit but he is home educated we pulled him out of school after 2 weeks of joining because of problems with his anxiety and nobody was listening to us.
There are other children at this unit being assessed for autism,adhd and other things.
Its such a shame as the unit is shutting next july and they are going to watch children within schools etc. and i dont think you get to see the child for themselves properly in a large class,also children like my son who are home educated will get missed.My son is 5.10yrs...does your son speak well?

hi claire,
yes my son does talk well. But he was a very late starter and has a very bad stammer/stutter when hes nervous, excited or frustrated. it will take him lots of trys to get what he wants to say out!
How old is your son?
My son has so many odd things about him that i strongly believe is not adhd. He is hyper but only occassionaly and i think its sometimes another way of getting his frustration out.
His teacher has also said hes not hyper at all. Just really loud, he can be like a bull in a china shop. he will run through things rather than walk round them.
But my concern with him is the way he doesnt like change and needs a constant routine. Also he has never ending meltdowns and is a severe headbanger. he will rock and chant all th time, whether his happy or sad and angry.
We have got use to Brayden being like this but if it is more to it i want him to have the corect diagnosis so he can get the help he deserves.
We have decided to gve the nhs another try and then go private if were still not happy in say a years time or so.

Its a shame the unit your son went to is shutting down, it sounds a really good way to assess them.

Hi stacey,i just realised i should have wrote after ADOS test they said my son WASNT autistic (put it down wrong earlier).My son is 6 in december we always described our son as having odd ways too,he can be hyper but not generally...we now know this is due to sensory problems.He doesnt like change nut weve have learnt ways to manage some things,he doesnt like sudden loud noises or loud groups especially like a classroom situation,but hes ok now in play areas,he doesnt like to be touched much and he has a terrible diet will only eat a few foods again weve been told this is due to sensory issues,he too has big tantrums almost like you would expect of a toddler then he lashes out and throws things.My son also likes to quote sayings off "youve been framed"
Perhaps you could ask about a longer assessment we didnt know they could until they offered it,how does he get on in school?

yeah i will ask about a longer assesment.
so your son got a diagnosis only after he was refered for a longer assesment?
He seems to be doing well at school, but so far his teacher has been excellent with him. Before he started we had a transition meeting and a home visit and we have gone through everything with her. She uses the techniques we use at home so, so far she has been able to handle him. She says that he often takes himself off to a quiet corner on his own when he wants to and has a little rock and chant and they leave him to it. They dont push him to do anything he doesnt want to do. He doesnt seem to like assembly time but hes happy to go in if hes sitting on her lap. He seems to cling to certain adults around him. I did think that maybe he isnt autistic because he does do this and is very loving (when he wants to be) but ive since read that this could also be a sign. So its really hard what to think any more.
I think im gonna give up reasarching it and instead write down everything about Brayden, ive already started and its 12 pages long aready and thats typed not handwriting. I just want to make sure that this time I havent missed anything. x

Hi,yes we only got dx after longer assessment,i think you drive yourself mad researching things. You said earlier you get used to the way your son is and i totally agree i think the thing with ASD is although there are similarities no child is the same often people meeting my son will be surprised if i say he is autistic but you cant tell in short periods of time.My son likes to wear soft clothes, hates coats,if indoors he always strips its lots of quirky little things.He seems to communicate well and wants to make friends but he talks AT people and is not good in conversation and also speaks inappropiately to adults...if they are speaking he will say excuse me over and over because he wants to say something he comes across rude but just doesnt understand why he cant talk over people etc.
I think you need to keep pushing for help as someone said to me doctors etc are experts, but you are the expert on your child you see him day to day.A teacher at the unit my son attends didnt get a dx for her dd until she was 16.

My son has Aspergers and ADHD. Aspergers is on the Autism spectrum and he has good eye contact and is very loving (loves kisses and cuddles). Concerns were raised at pre-school about him and a long process of assessments and 'wait and see' approach and finally at 5 and a half there was a diagnosis. I do believe that sometimes they don't want to say its Autism/Aspergers or whatever at an too early age if there is an element of doubt and this is why it takes so long. My sons diagnosis or Aspergers takes over the ADHD diagnosis and these 2 things can often go together.

My advice to you is to keep pushing for another assessment. Go with your instincts and don't give up until you get there. I'm not sure about going private. A friend of mine had a private assessment for her son (who was found to be dyslexic) but the school he went to refused to recognise it as it had come from a private assessment.

Jo

Hi All
I have been reading all of your posts, I have just joined...and I feel like I am getting no where fast. Brief history, I contacted my health visitor when my son was 18 months, he had septiceamia and pneumonia in Feb 2009 since getting him out of hospital, his sleeping went changed from being in bed by 6pm to now he won't sleep and then wakes up at 2am (cycles) no crying just very verbal, he isn't talking yet and still only knows mu (mum) da da, Ilan (brother Cailean) mama (grandma). he is under a paed from Jan and speech and language, we went for meetings in June re him entering into nursery (no money budget to support him). But since getting well finding Afasic (website) who have been great it has opened up and advice telling us he should be entitled to support from the school action plus. When reading the post, I have just put the phone down to the ed pshycologist who is going to observe him at school, but I like other posts said to her he has traits and certain things at home which are or similar to a child on the ASD spectrum, I am wondering whether I can take him privately and the costs of this, as early intervention is key but another 18 months by myself recognising signs and still no further forward.... he uses and used it for some time "door" which he uses in alot of contexts....taking his shoes off etc...I could just talk about it for soo long, It is totally warn be down and resorted to me in tears yesterday, where I start, people are asking me education psych what i want to happen...and I am overloaded, Afasic have been great, but it seems the LA are behind times, I can't believe I am a nursery nurse to and I'm just out of depth at the mo. Any advice would be soo appreciative.

Hi Jo
My son was diagnosed 4 weeks ago with asd, he isnt talking at all yet and flaps his hands and jumps a lot when he is excited or stressed. Other than that he is a normal little boy who we love so much. Jake will have an assessment on 18th October for 2 weeks, I'm also going on a speech and language course next month for idea's how to communicate better with Jake. Also we are starting to use pecs with him, hates it at the moment but he is very visual so think this will help eventually.We are going for private speech therapy once Jake has the assessment, as at the assessment they will give us a program to follow for 8-12 weeks and the private speech therapist will help with that program.
Jake also makes great eye contact and wants to interact with us all the time, he isnt in his own little world, he understands a lot of things but need any idea's or tips to help him start talking.
Hope you are feeling better, it is so overwhelming, probably havent been much help but message any time Jo x

Hi Stacey it was a long time ago now as my daughter is now 17 but when she was about 7/8 my X and me paid privetly for an assessmen, it took about an hour and we were told that she had ASD, we told the doctor that we felt she should have a brain scan so the doctor wrote to her consultent and asked for one. We had asked for about 3 times and been refused as it was too expencive, we got the MRI, on the nhs and as i had always expected it showed a deformity. Since then a consultent who did the MRI said that she may have an unusually form of ASD, Then a doctor said she did'nt have it at all and then a Autistic dyignostc team (sorry spelling ) said she did. Still we got he brain scan we wanted after being refused so many times so some good came out of paying for an assessment

doctors appointment waste of time !!!

hi everyone
i came across ur posts while looking into private diagnosis for autism
we went for a appoinment last week with a doctor to see if she thinks hes needs further assesment and it was a totally waste of time all of the quirky little things he does flapping his hands and his obbessions with fire ,cars , certain spoons, bowls etc that he has to eat from , terrible diet ( only eats baby 4 month porriage ) , only wears certain clothes , holds his hands over his ears when he hears a loud noise . all these things were ignored because he makes eye contact and has great social skills . although he is being refered back to speech therapy .
the lady keep saying he should be in pre school and he cant be assest while he isnt in a social setting but i dont wanna put him in preschool when i still think without a diagnosis his little ways would be ignored .
she said i had to get him in preschool then phone back with the name of the preschool he is in until then nothing more would be done .
i really ddont no what to do next and we only have a year until he starts school
my son also does the same thing that someone has already written on here when he keeps repeating excuse me excuse me until the person answers him i had never really thought of that being a problem b4 but when i think about it i dont no anyone else his age doing the same thing
do the things i have written sound like autism ??

To get a diagnosis of autism spectrum condition, a child must be presenting with difficulties in communication and interaction, flexible thinking, and social understanding. The manual that psychiatrists and pediatricians use states that the difficulties must have been present for more than 6 months and in more than one setting, which is why she is asking for him to be in a peer group setting at least some of the time - it's genuinely very hard to diagnose if you don't or can't see the way the child interacts with peers. This is because some children are just very shy with adults, but with friends they get on absolutely fine, like a different child.

TBH as the core difficulty in autism is a social one, if your son makes great eye contact and has good social skills, he doesn't sound autistic. The other difficulties you describe are sensory sensitivities which could, for example, be caused by diffiuclties with sensory integration, which often goes with autism but isn't essential for diagnosis, whereas social deficits are essential for diagnosis. Have you considered getting an occupational therapist's opinion? He could have DCD (developmental coordination disorder) or sensory integration disorder rather than autism.

going private diagnosis for autism/aspergers

Hi Clara,

I think like many say you must stick to your guns you know your child better than anyone else and to make a correct diagnosis they must have full family history of you Childs behavior which they can't get in a 45min appointment.

I would like to point out to clairec(44) - ASD is a spectrum and children can vary hugely as autism is a relatively new condition only just being discovered in the 1940's alot is still unknown you should also not be telling people that their child is not autistic off the back of a couple of threads - even if you were a clinical psychologist you would need months of diagnostic testing, which you have not obviously done. It is also a fact that none eye contact is not a main marker in diagnosis in ASD - abnormal eye contact like fixed gaze, staring for to long or not knowing when to break eye contact is a feature of ASD. So I would ignore what clairec(44) is saying she has her facts wrong. Clairec(44) also there are many forms of autism; atypical autism, childhood autism, aspergers syndrome, high function autisim etc please donít make ridiculous claims and start diagnosing peoples children over the internet it is extremely irresponsible many people will read your thread new to the condition and assume wrongly that your correct and my not get the help and support they need because of what you have written, you are wrong!

Clara;
Why don't you try to conduct the CHAT test if you havenít already and see if your child can meet that test- you can then go back to whoever you were seeing and have further evidence?

Also look to getting referred to your local Child and Adolescent Mental Health team (CAMHS) team they sometimes have specialist ASD teams that can do assessments following that you could ask your GP to refer you to your local child development team or your speech therapist could do that too.

I would suggest writing down all your Childs traits and difficulties and ages of millstones if hit, try to be as clear and concise as possible. Try to get other health professionals involved and to share your concerns- health visitor, school nurse etc professionals sadly take more notice from other professional rather than parents.

Donít accept partial diagnosis of tendencies, traits features or behaviors. Many parents are told that their child is not autistic but has tendencies. This can restrict access to help and support that your child and you need. Once your professional mentions autism you can push for him to agree that they do have ASD.

Donít accept that your child's learning difficulties are causing him to behave in autistic ways many ASD children do have learning difficulties AS WELL. A Childs intelligence level has nothing to do with if they are within the spectrum or not.

donít accept an alternative assessment if you truly belive that there is more to your Childs problems than the diagnosis suggests many child have ADHD,ADD, emotional and behavioral problems, OCD language disorders and the list goes on they also have ASD it is possible to have more than one condition.

if you do end up at a brick wall ask your professionals what they intend to do about establishing the cause of your Childs difficulties, if your child still has no clear diagnosis ask those involved where they plan to send your child for further diagnostic assessments? You need a clear diagnosis or to be referred else where.

Remember trust your instincts and views as you know your child better than anyone else- donít give up on trying to get the best support for your child.

I would advise to look at the newly published nice guidelines on Autism! I've had a quick look and they seem pretty informative. I was pleased to see that it clearly states that autism can not be ruled out because the child can make eye contact!

I think like many say you must stick to your guns you know your child better than anyone else and to make a correct diagnosis they must have full family history of you Childs behavior which they can't get in a 45min appointment.

I would like to point out to clairec(44) - ASD is a spectrum and children can vary hugely as autism is a relatively new condition only just being discovered in the 1940's alot is still unknown you should also not be telling people that their child is not autistic off the back of a couple of threads - even if you were a clinical psychologist you would need months of diagnostic testing, which you have not obviously done. It is also a fact that none eye contact is not a main marker in diagnosis in ASD - abnormal eye contact like fixed gaze, staring for to long or not knowing when to break eye contact is a feature of ASD. So I would ignore what clairec(44) is saying she has her facts wrong. Clairec(44) also there are many forms of autism; atypical autism, childhood autism, aspergers syndrome, high function autisim etc please donít make ridiculous claims and start diagnosing peoples children over the internet it is extremely irresponsible many people will read your thread new to the condition and assume wrongly that your correct and my not get the help and support they need because of what you have written, you are wrong!

Tabatha

Thanks for your comment, I respectfully disagree that I have diagnosed the OP's child, I have said that if he makes great eye contact and has good social skills he doesn't SOUND autistic, not that he isn't or is, and have suggested that the OP might want to look into a couple of other things that might also explain his symptoms. Far from telling her not to seek support I am trying to open up alternative possibilities. Of course you are right that people shouldn't diagnose other people's children over the internet, that is always a timely reminder, but the OP had already been through a diagnositic process that had recognised the traits but felt he didn't meet the criteria, and in view of some of the things the OP posted, she was asking if it sounded like autism, and I was replying that, to be honest, if he has good social skills and good eye contact it doesn't really sound like autism. But I would never expect someone to therefore withdraw from a diagnostic process. She asked for an opinion as to wether he sounded like he might be on the spectrum, and I gave one. Of course she should still go through the 'in real life' process.

Thanks for telling me about eye contact. I am aware that eye contact is variable in children on the spectrum. I am also aware of the different types of autism. This is because I am in fact a child psychologist and my job is assessing children to see if they are on the autism spectrum. I am also the mother of a child with asperger syndrome. However 'great eye contact' as stated by the OP implies 'normal eye contact' , which would be a countermarker for being on the spectrum.

I think if you read back again you will see I don't make any ridiculous claims or diagnose anyone's child. I also hope that I remain polite and respectful.

In future, I assume that in any threads where a parent is asking if this sounds like autism, we on this board are only allowed to say that it does? Or would that be diagnosing over the internet as well?

All i can say is keep fighting, if your not happy with a diagnoses get another opinion, but i will add, if your child is not in full time school, you will struggle more with a correct diagnoses and a correct diagnoses can make a huge difference which i will get too.

my battle started at about 1 years old and was told its terrible twos come early, at 2 i was told it was terrible two's, at 3 i was told its still terrible twos, and after saying i dnt believe it, i was refered to a paediatrician, and i was told its my fault and my daughter was diagnosed with reactive attachment disorder, after telling her what i thought about her and that diagnosis, i asked to be refered to another paediatrician which then told me there was nothing wrong, i asked to see another one and was told that i couldnt, but wait till she goes to school and maybe it can be looked at again. the first school that offered her a place in nursery i didnt like, i explained to them her needs and they dismissed them, and was entirely focused on the fact she was still in nappies, and kept saying that i needed to get her out of them before she started, i explained that i was told they have to take a child still in nappies, they said they do but prefer kids without them, i told them i have tried and she isnt ready, they was insistant that shes 3 she is ready and i need to try harder. i decined the schools offer and decided that when she was out of nappies i would find another school. about 6 months after i got a call from a school that i applied to when i lived at my last house, and i explained that i have moved, and her problems, her nappies etc they passed me onto the senco and he said we are out of the catchment area for the school but he would like to come and see me and my daughter. so he and a special ed teaching assistant came to see me and i explained everything and made a point of saying that im not downing my daughter with telling you all thats wrong with her, i just want to make sure where she goes are prepared for her (made a point of saying they will need an extra teaching assistant for her) and can meet her needs otherwise id rather keep her at home. of course my daughter was good as gold the whole time they was over, he said they will offer her the place and explained also that they have a paediatrician attached to the school that was not the two id already seen and if she does have something they will get her to have a look into it and not to worry about the nappy situation if she is still in them when she starts (in 3 months time)they will try and help get her out of them. incidently just before she started there she took her nappy off and sat on the potty and from that moment she was clean out of nappies and never once had an accident day or night and she was 4.

By the time she started they had applied for extra funding for a teaching assistant based on what i had told them and was awarded 15 hours, within 3 months of starting she was then awarded 32.5 hours which is the max. they told me that as soon as she starts full time school they will have a paediatrician assess her within 6 months, as they needed that time to see how she conforms to actually sitting and doing school work, she was allowed to do as she wanted while she was at nursery as it was easier lol.

Within a couple of months of starting school, they had the diagnoses process start with the school paed and it was amazing the difference in process, after going through pages and pages of paperwork, meetings etc the school paed suggested either adhd or autism, and autism was something i had not thought of prior as i assumed autism was classic autism and thats it, and i said ignorantly, as others have said to me many times over the years since " she hasnt got autism you can tell that by looking at her" she then explained to me the lining up of toy animals, the grouping smarties in colour groups and eating them in order of light to dark, disecting her food etc was signs of autism, but she has good eye contact, but also the behaviour displayed is signs of adhd, and said she will spend some time observing her, there, home and school. i looked up autism but still wasnt sure about it. when she observed her at school, the school told me that she spent the whole day there watching her and interacting with her which they hadnt seen for that length of time before.

After all the processes had finished the paediatrician said its a tough one she doesnt think its adhd as when she gets what she wants or the attantion she wants the behaviour improves and that creates consistency which you dont get with adhd, she said she is leaning towards autism more now as she noted that although when you get her to face you when you talk to her she can maintain eye contact but if you get her to keep facing you when she talks back the second she speaks she looks away, which the hadnt noticed before. but her issues are so complex she needs a second opinion from the complex communication clinic (panal of docters that diagnose complex cases) she said it will take time as they only meet up once a month and also it can take months to get a diagnoses back, but she will contact me after she has presented the case and got a response.

couple of weeks later she phoned me and said she presented the case that morning and they gave her a diagnoses right away of autism with particular aspects of demand avoidance, i said what on earth was that, and she explained to me that it was in essence a diagnoses of pathological demand avoidance (PDA) but due to politics of whether it is or isnt on the autistic spectrum (elizebeth newson centre says it isnt and my city medical people thinks it is) so they wont diagnose it, and neither could she as thats what she thought it was, so she had to go higher for the diagnosis.

i researched PDA and it was my daughter in every aspect, and it was important that the diagnosis was correct as you cannot use the same methods you would normally use with autism and adhd.

Sorry its long but i wanted to point out why you shouldnt give up. also why school setting is very important. which is also why alot of children are not diagnosed prior to 5 years old.

Thanks maryann, im going through the struggle at the moment my daughter is in nursery and they are useless! she is moving nursery soon and i hope this will help....
i think my daughter has some form of autism (poss asp)

we are also applying for schools and ive already spoken to the SENCO of my preferred school who is actually more on my side than the nursery area senco
i get the feeling most days that it boils down to money if they dont diagnose or recognise a need then they dont have to provide additional help for every month they hold it off they save money!

utterly shocking!

your story has given me hope x

above posts someone mentioned they had an unusual mri my daughter has had this done and has immature neuron endings i think in the brain stem is this your finding ^